#41 - Round Two

Date Sent: Mon, Apr 20, 2009 at 2:49 PM

I began a new pill this past December, and was told if that "didn't take care" of my tiredness (which it did for several months), then I'd need to be readmitted to the ICU and switch to a different iv medication, which hopefully I'd "respond better to." At first the pill did wonders, and I was even able to walk a mile on the treadmill 5 days a week for most of January. But then the tiredness came back. The last two emails I sent mentioned that I was getting more and more tired. This past Thursday I finally worked up enough courage (after having a good cry and praying with our Pastor's wife - long story), and told the doctor that I'm now willing to change iv medicines. I had spoken with his office several weeks ago (about something else), and mentioned that I had seen a change (for the worse) in my energy level. It's been unanimously decided that it's time for this change to take place - no more waiting.

We will be headed to Wheeling this coming weekend for the funeral of a family friend, then will drive back to our house on Sunday after church. Mother will drive to our house either late Sunday night or on Monday - she'll stay here with the boys while we're in Pittsburgh. And then Monday evening Aaron and I will be headed to Pittsburgh. I'll be admitted to UPMC Presbyterian (the same hospital I was in last year) on Tuesday, and they'll begin the change-over process. To my understanding I'll be in the ICU - due to the intense, potentially critical nature of the drug transition. They're hoping it will be an "uneventful" transition, but there's always the possibility that it won't be. They don't know how long it will take - I was told to expect probably "12-18 intense hours." And then they'll keep me for several days to make sure I'm tolerating it well, for some of the intense side effects to be managed a bit better, and to teach us how to use this new drug. They're hoping that I'll be home by the weekend - but they aren't promising me anything. It will be administered to me the same way my Flolan currently is - via a Hickman catheter straight into my heart.

The new drug is called Remodulin, and there are LOTS of good things about changing to it. It does NOT need to be kept cold - so no more waking up in the middle of the night to change ice packs, or worrying during the summer if my ice packs are melting extra fast because of the heat. We do not need to mix it from scratch (we currently have to do that every 24 hours with Flolan, and this process takes an average of 30 minutes). We'll only have to change the medicine cartridge every 2-3 days rather than every 24 hours, because it doesn't lose potency like Flolan does. There's a chance I'll get to use a smaller "pump," which means MAYBE I won't have to wear this huge black bag around my torso anymore. We won't know though, till I'm admitted - there is a 50/50 chance that it'll be the same pump we're using now - we'll have to wait and see. And if something "goes wrong," we'll have 2-3 hours to fix the problem before a potential heart attack, rather than just 5 minutes!

We are CHOOSING to view this change as a good thing. It will certainly be much easier! Before I was discharged in March of 2008, we were told that this change was possible "down the road." Aaron and the Doctor have been really encouraging it for at least the last 6 months. But, up until now what I had was "working," and had become a security-blanket of sorts. I knew what to expect, and could finally read my body to know what different feelings/sensations meant - both good and bad. It would be a bit more encouraging to me if I was changing out of choice rather than necessity ... but I've had almost 14 months to choose that, and I haven't yet. So, maybe this God's way of nudging me to change. Only God knows the reason(s) that this change is taking place. But I am now (finally) confident that it IS His will, and I am secure in that. It's taken me until this past week for that assurance, and so it wasn't until last week that I was willing to change to Remodulin. I am a bit nervous about going back into the same ICU I was in last year, and "facing" those memories in a more "in-your-face" kind of way. But we need to deal with our past completely so we can move on rather than letting it being a stone dragging us down, don't we?

My hope is that this transition will bring back my energy, but we'll see. I've been preparing myself (and the house) in case I'm "out-of-service" for a couple weeks/months. No one knows how I'll respond, or how long it will take for me to be up-and-at-'em again. Please join us in praying for physical safety during the hospital stay next week, and for us as we make this huge change in our lives - that it will be a smooth transition.

Thank you.
~ Julia

#40 - Peace Like a River

Date Sent: Tue, Apr 14, 2009 at 3:45 PM

It's now been more than five weeks since my last email. So much has happened in our lives - so much busyness, so much productivity, so much fun, but more importantly - so much growth! My last email ended with a request that you join me in praying for PEACE in the midst of some intense emotional turmoil. Well, God has been good - and it has been "given to [me]. A good measure, pressed down, shaken together and running over! (Luke 6:38b) I have gotten slightly "worse" physically since then. I now think that I have a bit TOO LITTLE medicine, not a bit too much. But we'll see. One day at a time. God is giving me strength for today, and sending people alongside me to help when it's needed.

At Bible Study this morning, a girlfriend and I were discussing if it is necessary (or not) to receive the Baptism of the Holy Spirit (which neither of us have so far), to experience true, deep, inexplicable peace. I (not that I claim to be an expert in this topic!) - I think not. When we first accept Jesus as Lord and Savior of our lives, the Holy Spirit comes in and resides in us. Over the past thirteen months I have had days/weeks/months of inexplicable peace despite the horrible circumstances. It has not been constant, but each time I prayed for peace - without fail God answered that prayer! Even though in my humanness I have had some rock bottom emotional times, God was waiting with his arms filled with peace ready to immerse me in it - as soon as I asked. Last month I was letting my thoughts run rampant like a run-away-train, but as soon as I prayed (and you joined me) for peace - it was there again.

Two songs have had special meaning to me lately. One is an old hymn - "It is well with my soul." Here's the first two verses:

When peace like a river, attendeth my way,
When sorrows, like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed his own blood for my soul.

This hymn was written by Horatio Spafford, after several traumatic events in his life, including the death of his only son in 1871, and the Great Chicago Fire which ruined him financially. In 1873 his wife and four daughters sailed across the Atlantic (he planned to join them later), and the ship sunk, killing all of his remaining children. His wife survived, and sent him the now famous telegram "Saved alone." Shortly afterward, he traveled to join his wife in Europe, and as his ship passed where his daughters drowned, he penned the lyrics on a napkin.

I've suffered nothing in comparison to so many people! If Horatio Spafford could experience that type of inexplicable peace while dealing with such deep, intense pain, then certainly God could - and will - make it available to me as well! He experienced "peace like a river" - not like a still pond, or a trickling stream. It was peace like a ROARING RIVER that had the power to move him from one point (maybe the point of pain, or despair, or sheer emotional exhaustion) to a different place (perhaps one of hope, contentment, or forgiveness). All he had to do was sit in the boat and stop rowing against the current, and God's peace would do all the work! We all have pain of some sort in our lives because there's sin in the world. But God - my God - is a loving, generous, forgiving God. James 4:2b says, "You do not have, because you do not ask God." Obviously this doesn't mean that God's just another Santa Claus - but all too often we live in defeat because we don't ask God for strength ... or peace!

In the second verse, to "buffet" means " to strike, as with the hand or fist; to strike against or push repeatedly; to contend against; battle." Satan's entire goal is to do battle with God Almighty - since it's obvious that God's gonna win that one, he settles (for the moment, at least), doing battle with God's children - us! Certainly the most sure way to get me angered is to hurt one of my children - this is Satan's tactic. All too often it works. I can understand when someone who hasn't experienced what Jesus has to offer, walks around and lives a life of defeat, unforgiveness, bitterness and even hopelessness. But, as a Christian, each of us have God's access to His forgiveness, love, peace, goodness, gentleness, etc! We just have to ask!

The second song, which I actually heard for the very first time last week, is "Finally Free" by Nichole Nordeman. I will let it speak for itself:

No chain is strong enough
No choice is wrong enough
No mountain high enough
That He cannot climb

No shadow dark enough
No night is black enough
No road is lost enough
That He can't find

And if the Son has set us free
Then we must be, free indeed
Let the chains fall away, starting today
Everything has changed
I'm finally free

No pain is deep enough
No heart could bleed enough
Nothing but Jesus' love
Can make a way

And if the Son has set us free
Then we must be, free indeed
Let the chains fall away, starting today
Everything has changed
I'm finally free


Peace be with you.
~ Julia